Tuesday, October 4, 2011

There Is No Spoon.

I'm not sure where it began.

It probably wasn't a singular moment or comment that began that ever-growing snowball. It likely was all of those little things, laid one by one on top of another; melting into a suffocating landslide of guilt and shame.

Probably, it was the college years when my A1C started climbing and I felt as though I was doing all I was able and willing to do at the time - but it was never anywhere close to good enough.

It could have been the many, many times where an endocrinologist visit ended in tears, because my answers were never the sort that could pass their test. It could have been the dread of those appointments eventually causing the pre-appointment build-up of anxiety and just plain fear. (And then, beating myself up over canceling the appointment.)

It could have resulted from not getting to hear the experiences of other real-life patients - of not knowing one single soul on that college campus who also had type 1 diabetes. I didn't know anyone else there who was living this same routine of shoddy math, bodily defiance and food distortion that I was.

It could have been my almost certain belief that one day, because I could never "get it right", I'd inevitably lose my eyesight. Or kidneys. Or toes. Take your pick.

It could have been realizing that "good enough" might not actually be.

It was seeing the impossibly low goals that my doctor had for me, and wondering, "How on earth do people do this? How do they do this, and still live a life? How can they enjoy that life, when all they're apparently thinking and worrying about is what diabetes is doing to them?"

It was being absolutely convinced that every single other diabetic in the entire universe must have this figured out, except for me.

I was convinced that I was the only screw-up. The way my doctors reacted to my self-care only reinforced that belief - because the only reason they'd be so shocked and disappointed would be because I was their worst patient, right? Because everyone else was achieving these kinds of numbers? Isn't that what was happening?

It was partly because questions were phrased, "Why are you still high in the mornings?", and "You are low way too often; what are you doing to cause that?", and "Why didn't you do what I told you to?".

It was beating myself up over my failures, then resigning myself to futility.

It had never occurred to me that a "perfect" diabetic wasn't actually a real thing. My past experience had shown that the medical world (which was all I had at the time, as this was B.D.O.C.) tended to make it very clear that there is an acceptable range, and it's [here]. And if you can't get yourself there, it is because you aren't trying hard enough; you aren't disciplined enough; you aren't following their guidelines as you should be. The focus of blame tends to be on the patient's ability to self-manage, not on the disease itself.

It's one of the greatest gifts that bonding with this community has given me. Though it took a while for this to really sink into the parts of my brain and heart that can truly believe something, I think I can finally start to believe that there is no "perfect". There is "try your best"; there is "learn from your mistakes"; and there is "never give up". There will be questions without answers. There will be numbers without logic.

There is no productive benefit to berating myself. There is no positive benefit to my health when I internalize what I perceive to be "failure".

I can choose to let the outcomes of my diabetes decisions define who I am and how I live my life, or I can choose to accept the reality that the only parts I can consistently control are how I feel and how I react.

11 comments:

Thank you for this, Kim. I have been suffering some major fluctuations and the "do everything right and have it go wrong" thing, and this is exactly what I'm starting to realize myself and glad to hear it from someone else!

The myth of the "perfect PWD" is such crap, and I am always inspired when I see people dispelling that myth. We do our very, very best to control this challenging disease, and no one ever gets an A+. We only get those A1Cs. ;)

For a few years, I hid from others who understood diabetes, because I was afraid of being "found out"...they'd realize what a failure I was, and I could never face the truth that I was ruining my daughter's life.

And then...I found the DOC. And I wasn't alone. And there were adult PWDs...and they had ups and downs too.

I felt the same way!!! Always wondering why I couldn't seem to have great numbers despite all the stupid work I was doing to get them. It's not me, it's "D"!!!! Thanks for such a thoughtful post. I feel you Kim, glad we have the DOC to know we truly are NOT alone. xoxo

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